Need Encouragement: Dealing with Ileostomy & HSV2 Outbreaks

Jun 09, 2020 10:10 am

Hi everyone! New on here. I had an emergency colectomy in Jan 2018. I haven't decided yet if I want to go for the J-pouch as I feel so incredible so I don't want to let go of that yet. Obviously I know plenty of successful J-pouch stories but always being in the 2% of special cases I'm not ready yet. I was afraid to be intimate after my surgery because I thought all men were going to be horrible and not want to be with me. I def didn't give them the benefit of the doubt. I've thankfully only had good experiences thus far.

Now fast forward a couple of months ago I was diagnosed with HSV2 (Herpes). When it was confirmed I won't lie I took it harder than when they told me they were going to have to take my colon out!!!! There is so much negative stigma around it (honestly just like the stigma around ostomies) but it was really devastating because I thought now not only do I have a bag of poo on my stomach but now I have herpes and it made me really sad. Then I started reading so many blogs and stuff about people with Herpes and how they have normal love lives and all that and it's great but the last couple of months since being diagnosed I've been having so many outbreaks and it feels like it'll never stop and I'll never be able to be intimate again and no one will want to be with someone who has all of these *gross* things. I put it in quotes because people from the outside feel that way. And I always like to hold out hope that there are kind wonderful people out there that will love me regardless but I'm just having a tough time right now. I'm grateful for my health always.

So if anyone has any encouraging words of wisdom or advice or anything to help me get out of this sad rut I'd be so appreciative. Hope you're all feeling well x

Past Member
Jun 09, 2020 3:19 pm

Hi Cupcake,

Wow - you have had a lot to deal with in a short period of time! May I suggest that you take a big step back, and give yourself time to grieve? Because that is what you need to do - you need to grieve the loss of the way things used to be. All of us go through that after ostomy surgery, but you have had a double whammy. So be gentle with yourself, and give yourself some time. You need to remember that none of this was your fault. I know you "know" that, but do you truly believe it? We humans are so fond of finding answers to questions that sometimes we will find fault with ourselves. Easier to think that we are to blame than to have no answer at all. So, take stock of your thoughts, and if you are harboring feelings of guilt, do whatever you need to do to let those go. You will have good days and bad days throughout this journey. Give yourself permission to have bad days; even wallow for a while if that's what you need to do. But then ask yourself how you want to live the rest of your life, and do what you need to do to get on with the rest of your life. You don't need anyone's permission to be who you are, and to live your life in the way that you want. Period.

Push yourself out of the sadness rut. Get outside every single day for "mindful" walks. By that I mean observe what is going on around you, rather than what is going on in your head. Notice, without judgment, the temperature, the sun or cloud, the roughness of the tree bark, the unevenness of the ground you are walking on, the birdsong you can hear, the color differentiations in the house bricks - anything that gets you out of your head. You already know what's going on in your head, so let that go for a while, every day. Make a point of reminding yourself, every single day, of what you are grateful for. Write it down, maybe in a gratitude journal. Do you have clean air to breathe, clean water to drink? Not everyone in this world has that. Do you have family and friends who love you? Not everyone does. We all tend to take a lot for granted; during times we are grieving, we need to remind ourselves of what we are lucky to have. Cupcake, this routine won't change things overnight for you, but it does work. This is what I did after my cancer diagnosis and treatment, and ostomy surgery. It helped me a lot.

You will need to arm yourself with knowledge. It is the most powerful tool in your toolbox. So talk to your doctors, check out (reputable!) internet sources, and join up with groups that can help. You have taken that step by reaching out to this group - good for you! Keep searching until you get the answers you need. Accurate information is your pathway out of the maze.

And finally, you have to address what you are looking for in a partner. You said that you have had mostly good experiences so far, so that tells me that you have been able to find partners who are not so shallow that they would reject you because of your ostomy. Let that inform future choices. Human beings are on a continuum, ranging from shallow to deep, and everything in between. Look towards the deeper end. On this site, you will hear people who have had horrible experiences with intimate partners, and you will hear people who haven't had bad experiences at all. Look in the deep end. There are lots of people of both genders (and LGBTQ!) who are mature enough emotionally to look beyond the superficial and see the real person. They are all in the deep end.

Above all, Cupcake, don't give up hope. I can hear the sadness in your post, and although our situations are different, I will tell you that it can get better. One of the silver linings of your experience is that it has likely made you more compassionate toward others, especially toward people who are struggling in life. Let that part of you grow. When you do that, you are swimming toward the deep end, where you will meet so many like-minded people. One day, you will be offering support to someone else on this site because of your life experiences. Keep us posted on how you are doing.


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Jun 09, 2020 9:06 pm

Laurie, I can't explain how moving this message was. I seriously cried for about an hour. You have a way with words and you are just so incredibly kind. After reading, I've written a few pages of my feelings and I'm definitely going to start doing a gratitude journal. I will say I have accepted my ostomy and I'm very, very grateful for it every day. So now it's time to come to terms with this and find the light. I know there is always a light at the end of the tunnel, even if it takes time. Thank you again so much. You don't know how much this meant to me.  

Past Member
Jun 10, 2020 3:02 am

Cupcake, I, and all the others, are here anytime you need us. But you are stronger than you think you are. Not all of us have our mettle tested, but those of us who do often are surprised to find that we were up to the task. I am confident that you are too. How do I know? Because I can hear in your voice that you want to be. You want to be strong; you haven't given up. It took courage to reach out on this site - do you ever think of yourself as courageous? One of my favourite quotes is "Courage doesn't always roar - sometimes courage is that small voice that says I will try again tomorrow." That is what I heard in your voice. Courage. Cupcake, when things get bad, try to remember that there is a beginning, a middle, and an end to everything. No matter how bad it gets, it will change. Let that be like a mantra for you - things will change.

Many of us on this site have a good understanding of how bad things can get. I remember being so depressed facing my cancer and the prospect of having an ostomy. I thought I would be unlovable, disgusting, and that no one would want to be around me. And that really hasn't happened. The people who loved me before my surgery still love me. My friends still want to spend time with me. I won't say it's always been easy, but it wasn't nearly as bad as I expected it to be. As my brother once said, I'm still the same person, I just have more equipment. So, no matter what physical alteration or issues we have, we are no less lovable.

Being lovable starts with loving yourself. You don't need approval from anyone else - you need to look in the mirror and tell that person that you see that she is worthy of love. Because it is true. You have been through hell, and now you're finding your place in the world. It might take awhile to find it, but that's OK; this isn't a race. You and I are superheroes, Cupcake. Spider-Man can go jump in the lake - you and I are the real superheroes! Never, ever lose sight of that.


Jun 18, 2020 7:49 pm

Very well said! :) That is great advice for everybody.

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Jun 19, 2020 3:21 pm

I had a J-pouch in 1993. It lasted until 2005 when I had a permanent ileostomy. Toward the end, it was as bad as before the surgery. I don't remember after the removal the percentage of failures the doctor told me, but it was high. You should look into how many fail? Hand-sewn or stapled pouch? Mine was hand-sewn, and I heard that was an older type that wasn't as successful. I wish it had worked for me. I hope you get the correct info and make a wise decision. I did know a woman who had the J-pouch, and she has had no major problems. Hate that we have to live with this, but we will survive. Good luck!!

Jun 20, 2020 1:57 am

Cupcake, I found out I had HSV 2 in 1997. I researched it and joined support groups. I also had several relationships. I had my total proctocolectomy in 2006. I continue to have a normal social life. It's amazing how I have found women who were understanding and comfortable with both situations. Outbreaks have become less frequent over time. 500mg of Valacyclovir daily as a preventative and 1000mg 2 a day during outbreaks works for me. Kevin

Jul 08, 2020 1:43 pm

Hi Kevin. Thanks for replying. It's nice to hear someone has dealt with what I'm going through. Did you have UC or Crohn's when you had your colectomy? I've been reading that people with weakened immune systems can get some serious complications from having HSV2, but my doctors have said not to worry. So, have you had that at all? Or you found the medication kept it at bay mostly. Are you taking the Valacyclovir every day? If so, have you noticed any side effects being on it constantly or it's been okay? I'm not on a three-month suppression treatment because I was getting a lot of outbreaks just within the three months of being diagnosed. It's very frustrating at times. I love to hear that you've had a normal love life and regular social life. As we should!!! But you know there are some people out there that are not nice, but f*ck them! This makes me happy to hear though. I hope you're feeling well.  

Jul 08, 2020 7:20 pm

I had ulcerative colitis for approximately 10 years before HSV diagnosis. No concerns about the two correlations, I considered and tested them individually. I was diagnosed with colon cancer about 9 years after that. The daily meds I take for many years now for HSV seem to only have a benefit for suppression. Everything else is fine and as I said, I live a normal life.

Jul 08, 2020 7:21 pm

I had ulcerative colitis for approximately 10 years before HSV diagnosis. No concerns about the two correlations, I considered and treated them individually. I was diagnosed with colon cancer about 9 years after that. The daily meds I take for many years now for HSV seem to only have a benefit for suppression. Everything else is fine and as I said, I live a normal life.